Tag: autism

I must apologise for my lack of blog posts recently I have had to take some time to step back and breathe after the incredible response to my husband’s social media rant. If you missed it you can catch it here …….

The fallout from his spectacular f-bomb laden rant has been tremendously positive. Heartbreaking to hear so many stories of exclusion from all over the world, promising to hear people admit they acknowledge a lack of empathy and their need to change.

That post was not meant to go viral.

When it did, although I embraced it and ran with turning it into a positive from a negative, in reality it actually terrified me. I am and have been for the last 15 years a sufferer of depression, anxiety and OCD and to be thrust under the spotlight like we were was extremely daunting. Parenting criticised, by idiots granted but still hurtful nonetheless. Trolled, not as much as I imagined but they still came out from under their trip trap bridges to throw the odd insult. This behaviour is difficult to manage by most. I however am not most. It has given me many more sleepless nights if that is even possible. I have analysed every post and comment, dissected it and gone back to look at it a bit more. Thats what anxiety does. It’s relentless. I stopped reading at your son is a window licker. The positive posts were amazing and we’ve been thanked a million times over for having the voice to say things that others haven’t been able to say.

When I was asked recently if I would like to appear on the radio show Mentally Sound on Spice FM I jumped at it. Another F”#k you to my anxiety that I will not be kept down, I can do these things. I love talking about mental health and it really frustrates me that people still feel uncomfortable talking about it. I understand why – stigma, stereotypes, etc have a lot to answer for. After all it’s not often you see mental health painted with a lovely picture it’s often accompanied by a horror story in the media. I have to speak for Reilly while he has no voice or finds new ways to project it and I will do the best that I can to advocate for him. I see posts on social media all the time about parents worrying for their kids, thats what we do as parents, worry but multiply that by a million and you may be getting close to my struggle.

The lads Ricky & Steve made me extremely welcome and it’s great to sit and talk to others who are unafraid to bare their souls on the subject. It affects all of us in one way or another.

Speaking of mental health recently there was a debate in the Houses of Commons about autism and suicide attended by approximately 10 MP’s. Now a recent study shows that autistic people are 9 times more likely to kill themselves than NT’s and will die on average 16 years earlier. A handful of MP’s to debate this isn’t good enough. I’ve been on to my MP to find out why she wasn’t there. You should do the same. You can find your MP and how to contact them here. Mental health services are an absolute shambles, people who want to help can’t and people who can help are stretched to the limit. Waiting lists are too long and people are suffering horrifically. It has to change.

Use the #askingautistics hashtag on twitter. As I said in the interview I am an expert at being Reilly’s mam thats where my expertise ends. Get solid advice from actually autistic people. There is no better guidance whether you are a parent, a fellow autistic person, an employer, a friend. I talked for 2 hours with an autistic adult last week and he blew my mind with his concept of how Reilly’s thought process works.

ps want to help us tell it how it really is? Then please donate to our crowdfunder if you can for The Life of Reilly pilot with offline donations we are headed for 3k. This is our chance to educate a wider audience. The play has done exceptionally well and returns to the Northern Stage on March 16th. Tickets for The Life of Reilly available, it will sell out.

I was in a meeting this week to talk about turning The Life of Reilly into a screenplay. At first it sounds impossible but the more I learn and investigate the more I think there is a really good chance of it becoming a reality.

I had no idea how much money would be required or what it would entail. My good friend Steve who plays Ged Reilly’s Dad in the play has a Act2Cam film school and is well connected in the industry and Alison Stanley who wrote The Life of Reilly play already has the film mapped out in her mind and in her notebook.

To dangle the carrot to distributors etc there must be a 10 minute high quality pilot professionally made. This involves bringing in scriptwriters, a producer, a director and casting. The scene used for the pilot will most likely be the explosive showdown between Reilly’s Mam and the local council about school transport. We’ve all been there and can relate. I think, not that i’m an expert, that it will in a snapshot capture the everyday stresses we face. Handing you most precious belonging over to a complete stranger, trusting them to care for your child and your child not able to relate to you whether they like this person, whether they feel safe or threatened with them is the hardest thing i’ve had to do.

I wish people knew how we truly live. A minefield of marital disagreements bore from stress over money and time misspent, from a cocktail of sleep deprivation and anxiety, from a fear for their future that gathers a permanent black cloud of uncertainty. The battles we have, the books we must read, the dossiers of papers we amass hi-lighting every single thing your child is ‘failing’ at to reach an unnecessary milestone to achieve a vital tick in a box to notch up the score on the SEN school lottery. All this when all we want to do is celebrate their achievements no matter how small. All this just to get our children to the school and the education they have every right to.

People leave the play touched by what they have seen. It changes their perspective about autism family dynamics and I like to hope that their new found realisations are shared with friends, families and acquaintances drumming down judgement from the lookers on. A film on TV could do so much. NT actors working alongside autistic actors and consultants is a dream. No flowering it up just telling it like it is in all its glorious sometimes heartbreaking detail.

Please if you can support this project, click the link below. I trust the professionals who are already lining up to do this pilot and hopefully full length film the justice and the air time it deserves.

What a week! Since Shane’s post about Reilly went viral I have spent my time pretty much trying to keep up with the thousands of messages we have received. Messages from all around the world all with the same story – that happened to us too and still is happening from child through to adult.

I am overwhelmed and heartbroken in equal measures about how much of an enormous problem inclusion is for our fantastic kids. In fact not just our kids, I have had messages from parents who’s kids are excluded by friends and family members, adults excluded because of race, religion, the LGBT community and many more. We are all human and this just isn’t good enough. Who are we to judge another?

I received a message on Wednesday night on our way to London to talk to This Morning.

It was from a Mam who has had the same problem, she arranged a tea party for her beautiful little girl Jaycee which no one attended, they were having another in a place close to me with cakes and a magician and would we like to attend and we did attend yesterday!

Because we were somewhere new and there were a lot of new faces it took him a little while to settle but once he did he was brilliant. He did spend the first 10 minutes trying to open Jaycee’s presents but problem solved simply by moving them out of sight.

He skirted the edges as the children sat on the floor watching the magician (who was awesome by the way John Penman). He didn’t join in the games directly but watched from the sidelines. He loved the cake!! He danced to gangnam style and shocked me by grabbing the microphone and becoming very vocal, not words anyone would understand but for me I’ll take it and I loved it.

An amazing family with an incredible little girl. Kindness costs nothing people and will enrich your life. Maybe more people should try it.

Don’t you just love it when you order something and then forget its coming and it’s the best surprise when you see it drop through the letterbox!

Earlier in the week I ordered a book called Pop Fantastic. The book is about Pop who is 7 years old, autistic and the writer is from the North East – what’s not to love here? obviously I was going to buy it.

The book written for children and not just autistic children is beautifully illustrated and the perfect length to keep little curious minds happy.

The story shows that although Pop experiences things differently those things make him incredibly special. A magical land, a new friendship and a hero in the making. I see this as a perfect bedtime story and will be reading it to Reilly tonight. I hope to see more of Pops adventures.

​​Reilly said cheese tonight. He’s said it before and I love it when he does as it lets a tiny chink of light through on what lies ahead. He went on to babble for about 15 minutes and for some reason tonight it made me really emotional.

I cannot express how huge my desire to have a conversation with my boy is.

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He tries so hard. It makes me so fucking angry the frustration he faces daily to make himself heard. Don’t get me wrong we manage most of the time I know what he wants as he is a brilliant communicator via other means but sometimes it overwhelms me that he’s 6 and we haven’t had a conversation.

Imagine having none of the magic conversations about the run up to Christmas, I tell him regardless and talk to him as much if not more than Alex and Ellis, sometimes searching on his face for clues that he gets it. I think he does there’s no flies on Reilly and I think he knows exactly what’s going on but I can’t be sure because he can’t tell me. He points to Cars3 track in Argos book and then at Santa so I know he’s made that link which is great and I’m now working on Reindeers and carrots. Might not sound like a big deal this is just an example but apply to any part of his life. How was school today Reilly? Nope I’ll just check what his teacher has written in his diary or I just don’t know.

As a Parent it’s your job to ‘get it’. I need to know what’s up so I can fix it, help him, make him happy. Sometimes I just can’t figure it out and that pisses me off royally.

In my poem called I’m Jealous which I wrote a while back I didn’t hide my jealousy of others in fact I was practically green with envy. I still am at some things and sometimes when my head is straight I know people might be jealous that they don’t have a Reilly. He’s awesome and I long for the day that we might talk, that day might never come I’m prepared for that, I think.

Ah don’t you just love the school holidays? Actually no, no I don’t. Holidays were hard before but now we have Tarly who just wants to eat your feet 24/7 so we have had to resort to drastic measures Reilly wears wellies in the house and I wear massive elf slippers from last christmas (not the greatest when the ice cream man rolls up playing his snooker themed chime and you’ve got a printed jumpsuit, no bra, elf slippers and a colour on your hair). He still got his ice cream! If you snooze you lose and he’ll take your toes off. Its like a constant game of the floor is lava trying to get from living room to kitchen. Reilly has even took to sitting in Tarly’s crate with the door shut, if I get reported to social services please be assured this is Reilly’s choice not mine 🙂

When Reilly isn’t squealing to escape his little needley gob he pretty much loves him and really belly laughs at a lot of his antics which is just fab! I distinctly heard Reilly attempt to say ‘down’ yesterday but didn’t capture it on video. He hears it A LOT to be fair.

I’m doubly vigilant as i’m not only watching for escaping Reilly’s but also escaping Tarlys too i’m checking doors like someone with OCD – I can say that I have it!

This morning when I was putting the mountainous piles of washing away (unironed) I was happy in the knowledge that the front door was absolutely locked and the keys out of reach. The back door was open to allow Tarly to run in and out if he wants to and for Reilly to play on his swing. Gate is padlocked so happy days.

What I didn’t bargain for was the fact that Reilly had switched the hose pipe on and had brought it through the kitchen into the garage which was filling up like a canny little paddling pool. Luckily there are 5 suitcases full of crap, 2 christmas trees, 2 bikes, 3 guitars, a wardrobe, 2 fireplaces, numerous bits of thomas track in boxes, some coving and 10 bags of clothes recycling bags to absorb some of the flow. Was like something from the day after tomorrow.

Every towel in my house was used, big sloppy cold messes that dribbled everywhere en-route to the washer. Yak!

Anyway we rounded off the day with a trip to Round the Twist and Asda so that equals a happy Reilly. He even stopped going up the slide instead of down it after I told him the slide police were watching.

ps

He’s currently melting down because I used his penguin christmas plastic plate and he’s trying to bite it in half. Neighbours if you are listening calm will be restored very soon.

Happy Days – Roll on Monday xx

Tarly went to the vets last week. The peeps at Pets at Home Cramlington were fab and a little bit smitten with the boy xx

Tarly is settling in brilliantly! We all absolutely adore him. Reilly is already starting to be more vocal around Tarly, attempting to say his name and usually shouting no when he’s hanging off his pyjama bottoms.

Things I have discovered since Tarly came to stay:

Puppies wee a lot.

I don’t like the smell of dogs poo.

I feel like a pin cushion off his little needley teeth.

Dog stuff is expensive.

I ❤️ shopping for dog stuff anyway.

I ❤️ the way he welcomes you even though you’ve just left the room for 5 minutes.

I ❤️ how excited he gets the second we wake up.

I ❤️ smelling the top of his head.

I ❤️ the way Reilly interacts with him.

I ❤️ that he sleeps at the bottom of Reilly’s feet.

I ❤️ watching him try and jump up the first stair.

I ❤️ that I can practically feel stress fleeing my body when I stroke him.

I ❤️ to watch him playing with Ellis.

I ❤️ this little lad as part of our family.

I have a really good feeling about Reilly & Tarly and cannot wait to see how it unfolds. I’ve started doing some training this week with Tarly so I can add that to my cv as well as nurse, negotiator, cleaner, teacher, house wifey, researcher, diplomat, advocate etc.

I’ll try keep you updated with their progress as often as possible. My new fave pastime is watching these two instead of the telly,